Hi Nayuki,
I had a PE event in December 2014, I was on Micogynon (ethinyl estrogen) at the time. While I was active, I wasn't as active as I am now, I make the effort to do some regular exercise now. I was in ICU for 5 days and considered lucky. I was told to stop the estrogen and never take again. I was back at work 8 days after the hospital admission, I wasn't allowed to have any more time off work, my boss wasn't understanding.
I did stop for about 9 days but, then recommenced again due to feeling worse off it. I take warfarin and haven't had any recurring symptoms, just that every little ache or pain in my leg makes me paranoid. I am currently on Estradot patches. I was on patches for 9 months prior to starting microgynon and then the clot occurred 9 months after beginning microgynon. The endocrinologist said that the microgynon combined with spiro was the best method to suppress the testosterone, I was also the endo first trans patient and unfortunately the advice from another gender Dr almost proved fatal. It shocks people when you tell them that you still take estrogen, unfortunately it's the main thing to help combat the torment of dysphoria, the benefits outweigh the risks.
The Dr's didn't do any testing to see, it was, it felt that they just concluded that it was the estrogen, didn't matter what form it was in, just purely the estrogen and that's that! The last time I saw my haemotolgist in July, his attitude had changed a little toward me and half agrees that it was the form of estrogen that caused the clot. He said that his training would indicate that any form of estrogen would be a contributing factor but, research shows that there is higher risk from Ethinyl estrogen. He said another contributing factor is not being active enough, regular exercise and body movements .
I am 15 months post orchi, performed by a urologist. I was considered a high risk surgery, it went ahead without complications and has made a large improvement to my life.
For a few months I have been trying to organise srs. I have had two denials for surgery recently, one said yes initially but, then said no. I have heard of a surgeon in New York that has done surgeries for patients with a history of dvt / PE
I heard back from a surgeon in India that says that as long as they know what medication you take now they can plan perio operatively.
I have sent a few other email enquires to other surgeons of options. I am located in Australia. I regularly see my GP, endocrinologist, haematologist and recently saw a cardiologist. All gave me clearance for surgery. It may mean that I have to work collectively with all my specialists to find a willing surgeon?
